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Janie PeskinColorectal Cancer |  Diagnosed 2015

Never give up HOPE! Life is a gift worth fighting for! Inspire others by being transparent about your journey. NEVER let your doctor give you an expiration date!! Always get a 2nd opinion .... and be part of “the team”!

Janie's Story

I was diagnosed in 2015 with stage 3C Colon Cancer through a routine colonoscopy. Due to years of Ulcerative Colitis I had to have a total Colectomy (temporary ileostomy) 12 rounds of Folfox, and then a reversal of the ileostomy (J-Pouch Surgery). Between the chemo and the ileostomy I became severely depressed but always determined to fight this demon and keep moving forward.

With the most supportive husband, my grown children and my closest friends (this was “my Village”) there was never a doubt that I wouldn’t beat this regardless of the odds! I went into remission for 1 year and then my CEA started rising. It turned out that the cancer metastasized to the lymph nodes above my clavicle and throughout my pelvis. My Oncologist at the time told me that I had to start chemo again and that I would be on it for life. No way ... not me. Enough Chemo! This body couldn’t take it anymore.

I am also a Triple Negative Breast Cancer Survivor... in remission for 15 years. Underwent adjunct chemo before and after surgery... my weight plummeted to 83 pounds and I went through 3 FAILED BREAST RECONSTRUCTIONS. I finally had a Doris-flap with implants after I switched doors and institutions. It was soon after that I was diagnosed with the colon cancer.

So when my first colorectal Oncologist told me that chemo was forever I simply said NO WAY. I went home and researched with my family and our research led us to Johns Hopkins and to a Dr. Dung Le. So we had to get records sent to Hopkins and when I asked my Oncologist here in Philly what were my Biomarkers she had no idea nor did she know about my DNA SEQUENCING. Are you kidding me?!? So the biopsy was ordered and the specimen was sent to De. Le and I got a call to say that she was conducting a clinical trial. So we scheduled the appointment packed our things and went to Hopkins.

I was told that I was MSI-High and that I qualified to take part in her trial!!! But.... I had to wait until my cancer grew. The cancer was too small to treat and I thought wow I have to wait agin for it to grow and spread to other parts of my body! So I waited ... totally terrified but I waited. I waited because I met a man on 2 support groups that was a colon cancer patient, a scientist/researcher with lots of experience.... Tom Marsilje! I PM’d him and he immediately responded telling explaining to me that Dr. Le was one of the most respected Oncologists out there and if she said to wait ... then WAIT! Tom also advised me to join Colontown .... a support group run by patients and top scientists/researchers and that I would learn about my options and about my disease.  He was RIGHT!!! I learned so much from this group and most importantly they taught me how to be my own Best advocate.

Finally a year later... the cancer started growing and Dr. Le started me on Keytruda. Fortunately, by this time 2017 ...it became FDA approved for cancers that had Biomarkers that were MSI-High. So we traveled back and forth from Philly to Baltimore every 3 weeks. It was after my 4th infusion that I started experiencing adverse reactions .... rashes, extreme fatigue, asthma, severe cough, sinusitis and then the worst... an allergic reaction to an antibiotic that sent me to the ICU.... running a fever of 105.1 and a blood pressure through the roof. Spent 3 days in the ICU where I developed MRSA. UGH ... what else could go wrong. I remember NOTHING about my hospital stay except I heard the doctors talking and one of them said, “She’s not going to make it”!

Well, they had no idea who they were dealing with. I was 61 years old and damn if I wasn’t going to beat this!!! So, finally I was sent home and I spoke to Dr. Le and she told me that my CEA markers were almost nonexistent. They went from 24 to 2.4. 💃💃💃

Summary: I stopped Keytruda in December of 2017 after only 4 infusions. My scans showing shrinkage and necrotic tissue... no growth! As of today.... 2019 I am still stable and Dr. Le doesn’t want to see me for 6 months!!!!! Patients need to know that clinical trials save lives. Get that 2nd opinion Never... Never let a doctor give you an expiration date And never lose HOPE!!

Question and Answers

How and when did you first learn you had cancer?

Routine colonoscopy in 2016

How did you learn about immunotherapy and why did you decide to do it?

I learned from Tom Marsilje, Colontown, Inspire and other support groups. I did it because I was chemo resistant, MSI-High. And most importantly I wanted to become a Mom Mom and on January 16, 2019 my daughter gave birth to our first grandchild, the LOVE OF MY LIFE💙💙💙👶👶💃💃💃

What was treatment like? Did you have any side effects?

With Keytruda I had many adverse reactions and side effects. Even after stopping Pembro in 2017 I developed Guttate Psoriasis which lasted 7-8 months and covered my entire body and was directly linked to the Pembro.

How did immunotherapy compare to other treatments you may have received, if any?

Immunotherapy is totally different from chemo. The side effects are different ... everything is different. The thing is I would do Immunotherapy all over again because with chemo ... once you stop treatment chemo doesn’t continue to work. With Immunotherapy it has trained the T-cells ( the immune system)to kill the cancer and it’s immune response memory.

Are there things that surprise you about the cancer experience?

Yessssss. It has restored my Hope that we can win this battle against cancer. Plus, getting these inspirational stories out there help others to fight their disease.

What would you want another patient to know about immunotherapy or about participating in a clinical trial?

Clinical Trials save lives. We are all in this together and Immunotherapy, in my opinion will be the 1st pillar for many diseases besides cancer. This is just the beginnng❤️💪🏻🥊💙

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Patient education information supported by a charitable donation from Bristol-Myers Squibb Company.
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